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Grace's transplant journey

Thirteen-year-old Grace first came to Great Ormond Street Hospital (GOSH) to be treated for a form of cardiomyopathy, a rare heart condition. During her treatment at GOSH, Grace was put on the waiting list for a heart transplant.

Grace was first diagnosed during a routine scan. Her condition was initially managed with medication, but in 2018, after a few years of successful management, Grace suffered liver failure and grew very unwell. She was admitted to her local hospital and subsequently transferred to GOSH for further treatment.

It was a huge shock for the family when they were told that it was time for Grace to go on the non-urgent heart transplant list.

“We desperately hoped that a change in medication would get her back on track but after being in and out of hospital things got too serious, and she was moved up to the urgent list and admitted to GOSH where she had to remain. It has been the scariest time and such an emotional roller coaster. It’s been so hard for her brother and sister too who missed her dreadfully and were terrified for her,” recalled mum Michelle.

Next steps

Whilst Grace awaited her heart transplant at GOSH, she had an operation to fit a special device called a ‘heartware’, a mechanical pump which took over the function of her heart. Just one week after this operation, Grace was informed that she would be receiving a heart transplant.

“I had been at GOSH with Grace all week after she’d had her heartware fitted, so I had only just got back home when I got the call” remembers Michelle, “It was the last thing on my mind. We thought the transplant would probably be off the table for at least six months, and I was in shock. I kept saying to my partner that it was probably a false alarm and I’d be back home later that day. Even when she was going down to theatre, I still couldn’t allow myself to believe it was happening. Seeing Grace’s little face light up when I told her, despite how weak she was, was beyond words.”

A surprise visitor

During Grace’s stay at GOSH, she was surprised to receive a special visit from TV presenter Ore Oduba, star of Strictly Come Dancing, one of Grace’s favourite programmes.

“I love the costumes, all the fast dancing, the excitement and creativity on Strictly,” explained Grace.

Ore’s visit to the hospital was part of his support for GOSH Charity’s London Santa Dash, a fundraising fun run taking place on Sunday 9 December. Ore joined Bear Ward’s play team, making snow and playing with Christmas photo booth props. Grace and Ore even had a go taking some festive pictures together. “We did take some Christmas pictures and we put the Santa hat on the Glitterball trophy, we both agreed it looked good in the hat!” exclaimed Grace.

The Bear Ward play team have supported Grace’s creative streak and love of art, displaying her sketches and recently helping her make a life-sized TARDIS as a surprise for her brother Freddie, who is a huge Doctor Who fan!

“Having the play team come and spend time with Grace every day made life significantly easier for both of us” said Michelle, “They really helped entertain Grace, but it also meant that for an hour every day, I knew she was being kept busy with a fun activity, so I could go and have a coffee and just have some time to myself to reflect on everything.”

Making a difference

Participants taking on the London Santa Dash will join Ore and thousands of their fellow Santas to raise vital funds for GOSH Charity, money which could help fund the hospital’s dedicated play team. Through play, the GOSH superheroes ensure children feel in control, calm, informed about what’s happening, and most importantly, able to be children. Play has been proven to be vital for a child’s development, well being and recovery.

Santa up, fundraise for GOSH and do good this Christmas!

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